Just when I thought I couldn't go further down the rabbit hole....

I believe it's known by now that this blog is mostly my own cathartic place to share our experience. In the back of my mind I also hope this can someday be an encouragement to others going through a similar experience.
Today will not be that day.

Here is the view from my new recliner/bed:

Don't be jealous.

I was having a difficult time deciding if I should go home tonight or tomorrow morning. There's a high fire danger advisory and after having fire come practically to our front porch last year, I'm a little freaked out. I like to be home on these really hot days so I can be on red alert. It gives me the illusion of control.

But Dominic asked me to stay. And so I stayed.

I haven't showered in two days because I thought I'd be driving home this evening. Then, when he asked me to stay, I decided I'd go downstairs for some dinner, grab a shower and tuck into bed for an early night.

Then.

Thant was not to be.

Chaos.

The fire alarm went off. But for real. They have drills all the time, but this time it meant business. Even though there wasn't a fire, the alarm was screaming, all the doors were shut and the sprinklers went on in the room across the hall. I tried to mind my own business as I heard the nurses screaming "Oh my god!" "How did that happen?" "Here's the eyewash, quick, bring him over here." But as I saw more and more employees gathering outside our door, I had to peek.

They were grabbing blanket upon blanket to staunch the ankle deep flood of water from the room. They did a good job too, because it didn't reach our room. The turquoise and white blankets were piled literally to the knees.

Nevertheless, we had to be evacuated. They told us we could go in the family room around the corner. So, we went and sat. And sat. And sat. Dominic has barely been able to sit up for the past month, and he sat. People would check in on us. People would ask if we needed anything. A room with a bed maybe? I cannot imagine if I had gone home. Who would sit with Dominic?

Someone told me they made him a fresh dinner. since the first had just been served minutes before evacuation. But he couldn't eat yet. Too shocked I think.
After sitting for nearly 3 hours, I finally convinced him to eat a frozen meal I had in the family room. I'm so glad he did, because by the time we got to a room, that promised second meal was also taken away. They would have brought him food but.....things were pretty dicey by this time. (I'm sure the nurses would move the moon for us if they could, but there were just too many unknowns. Some of the dayshift nurses stayed until we settled in a room which brought their day to 15 or 16 hours.)

We were alone in the family room. A Russian couple were with us in the beginning, but they were taken to a waiting room somewhere else. The rest of the patients got to stay in their room with doors closed while all this was going on. Just my precious Dom plopped on a couch. He and I are very close, but I can't even tell you what was going through his mind sitting there wrapped in a blanket.

We were informed the whole unit would have to be emptied for cleaning and testing. They would be distributing us into the ICU. Also known as germ central. The rooms had to each be sanitized by the little robot I wrote about before. The little germ killer. That was time consuming. There was a lot of confusion. Shift change was happening, and nurses were trying to nurse and figure out what to do with 16 or so patients.

Here's the thing. I had to get all assertive again. I do not like rocking the boat. Dom hates rocking the boat. But what I don't like even more is watching my guy stare into space because he's usually catching his first chunk of sleep by 9:00 at night, and instead, he's got a blanket around his shoulders and he's sitting up till who knows when. So when they tell me they're taking the patients in waves and Dom's in the third wave I freaked out a little. "So you're telling me that the patients who have been in their rooms, in their beds this whole time are being transferred before Dom, whose been sitting for the longest he has sat in weeks?" This is what they were trying to tell me, but I was not having it. I don't want special treatment. But come on. You've got one patient not waiting in his bed. Take that patient first.

I also had to fight with the nurse from the new unit about getting our stuff. She asked if there was anything we needed urgently, and they'd pack up the rest for us and bring it over. Um. No. I've got it, I said. But it needs to be cleaned she said. Cleaned? No. I will get my stuff thankyouverymuch. My favorite nurse and I just couldn't figure out what the deal was. It was if she thought our room was the one with the sprinklers? So, I marched back to the room and grabbed all our stuff. It's that illusion of control thing again. This day/month/year has been such a mind bender that carrying my own stuff from one unit to the other was my security blanket of control. And that's that.

They finally decided it's Dom's wave and they wheeled him through winding hallways and into a huge room with giant sliding glass doors and I'm going to be super morbid here, a huge digital clock with red lit numerals directly over the head of the bed, and it's the clock every doctor looks at in every doctor television show to pronounce the time of death. Ew. I'm not happy here. A plane is getting ready to take off, also known as a HEPA filter on full blast. We have to yell at each other to be heard.

There's no lav. (I stand corrected. After writing this, the nurse took care of some business and rolled open a cupboard to reveal a dinky little toilet. It had every appearance of being an airplane toilet, including a giant push button flush. It's all tucked away behind a curtain. Not a green curtain. This is certainly not Oz.) No shower either. It's a huge room, but it's crowded with arms coming down from the ceiling with wires and monitors and such. As huge as the room is, we found ourselves shimmying around as we did whatever needed to be done for Dominic.
And.
There's no cot or couch. No bed for me.

After hours of waiting in the cold family room, exhausted, there's no bed. (I know, I know...I've been spoiled that they've had a bed for me at all....)

And.
Rule number 2: No sleeper chairs or cots in the rooms.
I already broke rule number 1: No eating in the rooms.
Once Dominic was settled in his new bed and slipping into sleep town, I went downstairs for dinner. At the fashionable hour of 10:30. I brought back my box of salad, plopped it on his bedside table and began eating...only to have him wake up and point to the sign. Oh well. If ever there was a time to be a rebel.

We have our favorite nurse, without whom, I swear I'd be having a major meltdown. We love her. She loves us. I can be snarky with her and it's all good. We just laugh. I think she appreciates the irony of me staying the night because as it turns out, Dom needed me more than we even realized tonight especially, and yet the circumstances are not so conducive to having a caretaker. There is no way I would be okay with him sitting in the family room for 3 hours alone. No way. I really needed to be here tonight. And, on a less important note, I needed to be here to pack up his clothes and drinks and accumulated belongings from his unexpected weeks upon weeks stay. In every way I was meant to stay here tonight of all nights.

And there is no bed for me.

But, our favorite nurse is a rebel too, I guess, because she at least managed to smuggle in a reclining chair and some linens.

So, here we are. It's morning now. I watched the sunrise from my recliner. I think I got two hours of sleep. For all the drama, Dom is actually chipper. He's got World Cup playing and he was able to sleep between blood pressure takings and what not. He's so fragile right now, this could have gone either way....but he's such the guy. The nurse is astonished he's still smiling and laughing.
Word is, he's being moved back to the unit today. It cannot be too soon, as ICU makes me so nervous. Seeing Mersa signs on doors....is there Mersa in that room? Or are they just testing? I don't know. I've felt so safe over in our BMT bubble.

I'm really just probably quietly hysterical right now. It is astonishing that I have had to "evacuate" twice throughout this process. Once I thought our home was going to burn down, and we had to find a place to live for a week. And now, though it's not nearly as dramatic, I'm definitely going to need some chocolate.

I'm definitely looking forward to quiet days at home with my guy feeling much better. Until then, maniacal laughter at how absurd these days have been.

Marking the last day of normal~

Today marks one year since the last day of normal. One year ago today, we were both busy working and life actually seemed near perfect. We went to bed concerned about the mysterious bruising and that was the last time we slept in our bed in our old life. I did have an ominous feeling that week. But, I certainly couldn't begin to imagine how life would unfold this next year.

It feels like yesterday, and it feels so long ago.

In those first days, I'd imagined that by one year, we'd be back to normal. Of course in between imagining we'd be back to normal, there were moments of terror that things would never be the same.
And putting one foot in front of the other, we have handled more than we ever imagined we could handle. That first week in the hospital, I couldn't imagine spending a whole month in the hospital. I couldn't imagine putting our life on hold for a whole month. And now, it's a year. By my calculations, Dom has spent nearly exactly half a year living in the hospital. I could never have wrapped my mind around that the first week. But, time has a way of preparing us. And there's really no manual, no friendly word of advice that is better at preparing us than time.

The very first nurse we had was pregnant when she met this completely shattered couple. I just ran into her in the hall for the first time since then. (If you remember waaaaaay back almost a year ago, I shared how they moved us into a new room literally in the middle of the night, and Dominic had his first ride in a wheel chair that may have felt a little more like teenagers pushing each other in grocery carts down dark alleys than a grievously ill patient in a wheel chair. We moved to another ward and never saw that nurse again.) I asked the nurse about her new baby, which is now already 8 months old!!! How can that be? This little life that wasn't even in the world when we started is now probably crawling. 

And the little one that I was helping out with is a whole year older. The little baby I just adore has turned into a little girl, who loves to go to preschool and thankfully, has not forgotten her auntie.

Since we first entered this hospital, they have opened a cafeteria. It opened 3 days after we were discharged from the transplant. Is that a silver lining to returning to the hospital unexpectedly? I get to check out the new cafeteria? It's a pretty thin silver lining, but I'll take it. I do feel weird eating from the salad bar, when I have avoided public food nearly a year now. I'd think a hospital would be the last place I'd want to dip into the trough. But salad. I need green in this land of beige.

Reflecting on the first months here, I am astonished at how timid I was. I realized there was a Starbucks just one block away, but I couldn't leave Dom's side long enough to find it. I think I also felt like it would be frivolous given our circumstances. But there it was. Right around the corner, and I never visited. We found a gluten free bakery that was just two blocks from our temporary home, and about 1.3 miles from the hospital. I guess it's well enough that we didn't know it was there until he was able to eat outside food. I walked there last weekend from the hospital and bought some treats. I reflected as I walked that day that the first week I had been lost and driven down that very road, and it felt so foreign. And now, I was walking there, feeling at home.

If the cafeteria is a thin silver lining, the thick silver lining is the way we've been held throughout this year.

There are people we can never repay. There are gifts in suffering.

There are people who have met us through all the twists and turns. There are people who were only quiet until we needed them and then they were johnny on the spot. Through the wonder of technology, I've met so many amazing people. I got to bond with my sister in law, though gosh I wish it could have been another way. I've reconnected with long lost friends who have brought so much to me. We've made new friends on this journey and Dom's been so fortunate to connect with mentors who have walked this path before him.

Dominic and I have also had long interesting discussions about spirituality. Sometimes, those discussions don't happen when life is "normal." Being the person I am, I thrive on deep discussions, and delving into the deep.

So, today marks the new normal. The new normal is, Dominic and I have a new appreciation for life. We have a new appreciation for the human body. We are able to weather the storms with a little less angst and a little more courage. The new normal means I'm going to be real open about how things are, and it is out of my control how other people receive me. The new normal means I have it in me to step up and gitter done. I'd rather be taken care of and pampered and only break a sweat in a hot yoga class, but now I see, I can start an engine on a burly weed mower with a pull cord, (which is no easy thing) and push that beast up and down hills. I will admit, my new normal does not include driving the tractor. At least not yet. And that is why the new normal also includes receiving with so much thankfulness so much help that we are both so humbled by. We never ever could have done this on our own. The new normal is remembering with greater clarity we are never alone.